A mother spending every waking hour researching her teenage daughter’s rare disease to find a cure, is hoping it will help other children around the world.

Scientists at Sheffield University are developing a therapy especially for Maddi Thurgood, a pupil at Saffron Walden County High with a rare form of motor neurone disease. If it works, it will be a medical first - and Maddi’s family and friends are just £64,000 away from paying for it.

The cost of this work is £224,000, Maddi’s family have paid £112,000 out of funds raised, which now total £160,000 including two donations this month of £10,000 each. One is from a trust which wishes to remain anonymous and the other from The Forester Trust, which also made a similar donation of £10,000 earlier this year. The trust gives out donations twice a year and this year it has twice chosen Maddi, with support from one of the trustees Melissa Jones, who is from the area.

Maddi, 16, studying animal care at the County High and previously a pupil at Helena Romanes in Dunmow, was diagnosed with a disabling illness two days before her 15th birthday in April 2016.

Maddi’s parents, Carina and Paul have sought help from across the globe, seeing specialists in Milan and in Pittsburg, America. But the girl who was once a keen ice-skater, can now only walk short distances with the help of a stick and now needs to use a wheelchair.

However, this year came new hope from neuroscientists in Sheffield. Led by Professor Mimoun Azzouz at the Sheffield Institute for Translational Neuroscience, researchers are looking at ways to replace the faulty gene which is causing her progressive disability with a healthy one.

Put simply, they are working on a virus which can carry a good copy of the gene into her body to over-ride the bad one. The process is due will be tested in the laboratory in January and if that is successful, Maddi will then be part of a trial to see if it works on her.

Maddi’s mum, Carina, who has set up a charity called The Maddi Foundation said: “We are so grateful for all these donations because, like everything else, it all comes down to money. People have read about Maddi in the newspaper and said ‘we’ve got to help this little girl’.

Meanwhile, Maddi is suffering from anxiety attacks and worrying about falling over at school. She is in the sixth form at the County High but only managing one or two days a week.

Maddi Thurgood. Picture: CELIA BARTLETT

Carina said: “Maddi is struggling. If we go anywhere, like a shopping centre, she needs a wheelchair. The disease is getting her down. She is upset that nothing has been able to slow it down. She hasn’t been given anything to help because, at the moment, there is nothing that can be done.

“If the gene therapy is successful, this will be the first time and Maddi will be part of a clinical trial and it could help others with similar diseases.

“I am speaking to researchers all the time, not just in Sheffield but at University College London and in America.”

She added: “I say to Maddi that she must keep fighting the disease and be strong. I tell her she should keep on exercising even if she is in pain. I try to encourage her to work and fight against it.

“It gets her down that she can’t do what everyone else can. You do feel sad that she can’t do what she used to be able to.”

The Donald Forrester Trust was established in 1986 by Gwyneth Forrester in memory of her late husband Donald who died in 1985. their neice, Melissa Jones said she had heard about Maddi by seeing collection boxes in shops in Saffron Walden and then read the details in The Saffron Walden Reporter and Dunmow Broadcast. She said: “We seek to fund charities where our donation will make a significant difference.” The trust gives grants to good causes twice a year.

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